About my quest to be the Bionic Woman

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rainbow 2The recent storms that brought such devastation to Oklahoma and elsewhere in Texas have provided the benefit of some much-needed rain for Dallas. I was lucky enough to capture this amazing rainbow close to my house after one of the recent storms. I’d intended to write an inspiring post to go with it — even had some great topics picked out. Unfortunately, I’m not feeling particularly inspirational, but I wanted to share the picture with you regardless.

The Euflexxa injections have quit working on my left knee. After more than two months of being blissfully pain-free, I am now back to hobbling around, barely able to put any weight on it. The Euflexxa started working immediately after the third injection. I woke up the next morning without any pain and, other than the occasional twinge associated with my RA acting up, I’ve been doing great.

The pain came back just as suddenly. One day I was fine — Cinderella dancing at the ball with her glass slippers. The next morning my coach had turned back into a pumpkin and I sat in the kitchen ashes as a cast-off step-child. It’s been about a week now. I thought it might be a temporary fluctuation, but each day seems to get a little worse — I guess as the Euflexxa continues to wear off.

So I go back to see my orthopedic surgeon in a couple of days. We were hopeful that the injections would work six or seven months. I guess I should be thankful that it relieved the pain during the time I had and recovered from back surgery. Unless my doctor has some other miracle tucked up his sleeve, we’re headed for a knee replacement.

Given that I already have had a hip and shoulder replacement, I’m quickly running out of things to replace and just as quickly headed for my transformation into (drum roll, please!) Bionic Woman. Maybe I’ll sponsor a contest to design a cool Bionic Woman Super Hero outfit.

I’ll provide an update after my appointment in a couple of days. Until then, thanks for checking in.

 

The way we were

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Last week was my birthday. As birthdays goes, it was fine. As they say, it’s much better than the alternative.

It’s interesting that when I talk about age with people from 30 to 70 years old, the standard refrain is, “I really don’t FEEL any older than I did at XX”, with XX being a number several years younger than they presently are. I know that I’m not the babe I used to be, but I still work lots of hours every week, take wonderful vacations when I can and overall enjoy life. Generally, if you asked me, I’d say that neither age nor RA have taken away much, if any, of my quality of life.

But birthdays have a way of making you stop and reflect.

It’s true that I, like many newly diagnosed patients with RA, read everything and believe that we have a good chance of being disabled within five years — or at least being sidelined from many of the things we enjoy. That was obviously an incorrect prediction on my part, but when I stop to reflect on the things RA has brought to my life, it does make me reassess the impact RA has had.

I have a new hip, a new shoulder, screws in both arms, and a rod and screws in my spine. I’m expecting a new knee any day now. (When I die, they’re not going to bury me, they’re just going to turn me into a hardware store.) In addition I’ve had multiple rotator cuff and other shoulder surgeries, countless hours of physical therapy, and more prescription pills and injections than you can count. I have a wonderful litany of doctors and surgeons I didn’t even know existed five years ago.

But I have to be thankful that in spite of (or more accurately, because of) all this medical hoopla, I’m still active, productive, and reasonably happy. If it weren’t for caring doctors, medical science, and good insurance, the prediction of my health and well-being I made when I was first diagnosed would probably be true.

So when I blow out the candles and make a wish, I wish for good health and give thanks for the complex medical machine that has allowed me to keep as much health and lifestyle as I have.

I also wish that today brings you health and happiness as well. Thanks for checking in.

Comments, please


I consider myself a fairly private person. I had a Facebook account for about two weeks, then cancelled it. I don’t tweet. I do have a Linked-In account, but I consider that in the same vein as I do the website for my consulting business. The fact that I’ve been blogging, and following RA blogs, for nearly five years is a testament to the great value that I find in sharing information and feelings among a group of others that “get it.”

I regularly follow about 15 blogs. Five or six of those are “friends” that I’ve following regularly for a number of years. Others I check in on occasionally or subscribe so I don’t miss their less-frequent posts.

I’m not much of a commenter and when I do it’s either on one of the 15 “regular” blogs or a new blogger that I’ve found and I comment to let them know that I’m new to their site and how I found them. I especially don’t comment much on blogspot because I hate typing those “prove you’re not a robot” words.

Occasionally, to the point of rarely, I run across a provocative blog where I have a differing opinion and feel compelled to provide a different perspective. I’ve always tried to do this respectfully. I would never minimize someone else’s opinion (especially on THEIR blog). I approach it by stating that I understand and respect their opinion/thoughts/feelings/conclusions, then suggest another way to look at the situation is XYZ.

More often than not, my comment is not approved. It never appears.

On one hand, I completely get it. A blog is a personal space that provides a forum for an individual to post their personal thoughts and opinions. Bloggers are under no obligation to post ANY comments whether they agree with their viewpoint or not. On the other hand, it is a public forum which, by definition, invites a certain amount of conversation and it is to be expected not all that conversation will be 100% consistent with the blog’s author. As long as the comment is done with respect and within the confines of good taste, should bloggers allow differing viewpoints?

I’m interested in your thoughts. If you have a blog what do you do? Have you ever had a comment that was “rejected”? Your comments are welcome.

Thanks for checking in.

Doctor Week

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In addition to the rheumatologist visit mentioned in my previous post, I had visits with my back surgeon, my knee surgeon, and my dentist. I’ll forego any discussions of the dentist as it was a routine, six-month clean and check and other than the discomfort of laying in a dentist’s chair for an hour while in a back brace, there’s not much to report.

I already reported some of the information from my rheumatologist visit. We decided to keep me on Orencia and 20 mg. leflunomide (Arava). We may cut back to 10 mg. of leflunomide once things get back to “normal” after the back surgery. One of the issues I’ve been having due to my back surgery is bursitis in my right hip from so much time resting in bed. It has been interfering with my ability to sleep. She had injected my left hip for the same reason before surgery and so she was agreeable to taking care of the right hip during this visit. It worked great and I’ve been getting a decent night’s sleep without drugs the last several nights since then.

The visit to the back surgeon went swimmingly. I had an X-ray beforehand and he was impressed that I’m already showing bone growth in the fusion area. They were amazed that I’ve been up driving and working and not on pain medication. I am confined to this blasted brace until the end of July, although starting mid-bone growth simulatorJune (which isn’t that far off), I can start weaning myself out of it. That will definitely be a relief. I can also now lift up to 15 lbs. and can increase the length and types of exercises I can do. (I guess anything more than nothing would be an increase, wouldn’t it?????)

I also have to continue to use my bone growth stimulator once a day for three more months. As you can see from the picture to the left, this thing looks like a steering wheel. It straps to my back on a belt and the little control box turns it on for 30 minutes at a time. I know that my husband secretly wants to drive me around the house like a kiddie car every time I put it on. You can’t tell that it’s working because you can’t feel anything. But my insurance company paid thousands of dollars for it (I know, can you believe it?), so I’m determined to get whatever value there is out of it although I have to admit that I do have some trepidation of having electromagnet waves so close to things like my kidneys and liver and other important bits.

Finally, I had the follow-up with my knee guy after the Euflexxa injections. The injections have worked wonders. On the day of the appointment, I walked from one end of the enormous medical campus to the far side where his office is and back again to my car. This is a far cry from me hardly being able to walk across the parking lot before the injections. So he and I are both really, really pleased. The big question is, what’s next? Eventually the knee will have to be replaced. It’s a question of whether I do it this year or perhaps do another round of Euflexxa injections when this past one wears off. On one hand, it will cost me thousands of dollars less this year because I’ve already met all my deductibles. On the other hand, after this back surgery, I’m not sure I’m up for any more repair work on my body in the near future. My doctor is agreeable to whatever course of action I want to take. I’ll just have to think about it.

So basically all things are good. No cavities, healing well, doing well, and RA has generally stayed at bay. I hope your life is also going well. Thanks for checking in.

The $64,000 Question or why I love my rheumatologist

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There is a common wistful thinking among children who either dream or wish or even believe that they are secret offspring of royalty or rock stars or perhaps anyone who is cooler, richer, and/or more attractive than their real parents. It’s the “how can parents as boring/broke/mean like mine have a child as cool/beautiful as me” syndrome.

In the RA world, there is a similar contingent of people. We’re the RA negative group and the group whose labs come back solidly normal/perfect every time. We’re the ones where there is no hard evidence from a diagnostic tool aspect that we are anything but healthy. At the back of our beady little minds (or at least MY beady little mind), there is the haunting question of, “What if I really DON’T have RA? What if I have something else?”

My current rheumatologist didn’t diagnose me. I changed after I got fed up with the office practices of my original doctor and switched. I haven’t looked back, nor have I looked further.

So today was my regular follow-up visit and I asked the $64,000 Question. (For those of you who are younger than ancient, decades before “Do You Want to be a Millionaire”, there was a similar program called the $64,000 Question. Same concept, different pay scale for a different time.)

The question was, as she didn’t diagnose me, after treating me for more than four years, would she give the same diagnosis of sero-negative RA — particularly in light of all my tests being normal?

She explained that during her fellowship training, she worked with a senior physician who impressed upon her that labs and other tests are fine, but they’re just a piece of the overall puzzle. It’s important to spend time with patients and listen to them. Doctors must learn about the patient’s experiences with the disease — both mentally and physically. If a patient doesn’t feel like they’re doing well with a treatment, then they probably aren’t, regardless of tests. And that’s what she does.

In answer to my question, she pointed out that when I’ve been on the biologics I’ve felt better. When I’ve gone off (either by choice or because of surgery), I had issues with joint swelling, pain, stiffness, etc. After four years of observing this pattern and listening to me describe my symptoms (and my feelings about them), she said that she was very comfortable with a diagnosis of inflammatory polyarthritis. Is that the same thing as my original diagnosis of sero-negative RA? In the strictest sense, probably not, but the symptoms are similar and the treatment is basically the same.

And because she listens to me, I have confidence in her, and I feel confident that my treatment is in good hands. I no longer feel like I’m really the secret descendant of royalty. I feel like I’m where I’m supposed to be.

To me, confidence in your health care providers is a key component of anyone’s well-being. For anyone with a chronic illness — it’s critical. If you have anything less than that, then I would encourage you to investigate further. It’s in your own best interests to do so.

Thanks for checking in.

It’s about time …

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First, let me just say that I continue to recover well after back surgery and that the Euflexxa injections in my knee have continued to work wonders. I will update more on the health issues in a separate post.That aside, I thought that I would FINALLY post some pictures of the remodel that we did. We have a small, galley kitchen, so below are right side and left sides of the kitchen — all new tile, cabinets, lighting. Also is a shot of the dining room with the new hardwood floors and the master bath with the new accent tile. Unfortunately I don’t have good shots of the new carpet or guest-bath tile. I’ll leave those to your imagination.

Enjoy:

Tile accent wall outside of shower.

Tile accent wall outside of shower.

 

Dining room with new hardwoods.

Dining room with new hardwoods.

New kitchen.

New kitchen.

New kitchen.

New kitchen.

A week after surgery

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I feel almost like there ought to be a town crier going through the streets proclaiming, “She lives!”

Actually, surgery went smoothly, I did great and was discharged from the hospital about 24 hours after I went in. Surgery was about three hours long and I was doing so well that they lifted the “liquid diet” decree and I got to eat roast beef and green beans for dinner.

Before Surgery

Before Surgery

I can tell the surgery “fixed” the problem. You can see from the image study before surgery that the disc was completely herniated and the vertebrae were badly degenerated. My surgeon said that the disc was just completely gone between the two vertebrae and I was rubbing bone on bone.

They cleaned out the remaining disc material, inserted some “spacers” to give space between the vertebrae, put in a rod and screws, and fused the vertebrae. Much, much better.After Surgery

 
After Surgery

There has been some discomfort, but little pain. I had one bad afternoon where the swelling around the surgery combined with sleeping in an odd position caused me to have incredible shooting pains down my left leg. I could barely move it, much less stand on it. The doctor’s office called in a Medrol taper and within 12 hours, it was 180 degrees different.

There have been other issues. My allergy to adhesives has left my backside raw and bleeding in some places and difficult to find a place to secure dressings on the incisions. Right now I’ve reverted to using strips of Press and Seal wrap instead of any kind of tape.

But overall, I’m doing great and glad to be on the mend. I appreciate all the healing thoughts and well wishes sent my way. Thanks for checking in.

… and to all, a good night

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I’ve had great intentions of posting before now, but between a surge in work activities and other things, just haven’t had the chance. I did want you to know that the last/final Euflexxa shot is working wonders. It’s an amazing thing to be pain free after months and months of constant knee pain that invaded both my daily activities and my nightly attempts at sleep.

This is Easter weekend, then Monday is back surgery. I’m sure while I’m off recovering I’ll have more time to post and finally get pictures of the house renovations up.

Please send our friend, Rheumatoid Arthritis Guy, virtual healing hugs as he moves forward with his new treatment.

Until then, be safe and well. Thanks for checking in.

a.k.a. Pincushion

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Last week was one of the more exciting ones in my medical life and, per the headline of this post, I did feel like a pincushion. Wednesday I got a steroid injection for my hip bursitis, my second Euflexxa injection in my knee, and my regular Orencia injection. That was followed Thursday by my myelogram where they injected contrast/dye into my spine and took pictures.

Wednesday was my regular follow-up with my rheumatologist. We had a lot to talk about with the pending back surgery, the knee injections, knee-replacement surgery, and new “sausage finger” symptoms. By the time we got through everything, I’d spent most of an hour with her (which is one of the great reasons I like this doctor — she will take the time needed). We discussed whether or not the Orencia is working and that’s something I need to think about in the coming weeks. After having been through methotrexate, Humira, Simponi, and now Orencia (which is a different class of drugs than Humira and Simponi), the options are getting more limited. She did increase my Arava from 10 mg to 20 mg, partly to get me through surgery when I have to go off Orencia. Orencia does help, I just don’t know that it helps enough. She did give me a steroid injection for my hip bursitis, which I wasn’t expecting, but which I appreciated. It had gotten to the point that it was difficult to sleep on that side (as well as walk or do anything else), so getting the bursitis calmed down before surgery is a major benefit.

After I left my rheumatologist, I went to my orthopedic surgeon’s office for my second Euflexxa injection. Again, the injection didn’t hurt at all. The really good news is that, five days later, my knee doesn’t hurt either. True, I gave my knee a good rest after the injection since I was down for bed rest after my myelogram Thursday, but I’ve also been giving it a workout. We spent a couple of hours wandering around the Dallas Auto Show on Saturday, then on Sunday, I was on my feet for several hours working on straightening up closets and bookcases. I am really encouraged. I don’t know how long the total effect will last after my final injection this week (supposedly several months), but it is such a relief to have the knee pain-free. It’s hard to enjoy anything in life when you’re in constant pain and I feel like a new woman. (In my younger days I would have felt like a new man, but since I’m now happily married …)

Then the following morning was my myelogram and CAT scan — which are the final diagnostic tests prior to my surgery. My brother had a bad experience when he had one a few years ago and with all the cautionary information on the Internet, I had a bit of anxiety about the whole situation. However, other than a bit of light-headedness due to my vasovagal reflex, it was pretty much a non-event. The only discomfort I had was the bit of sting when they numbed the skin on my back. The really hard part was afterward when I got home and had to lay down with no more than one pillow for 24 hours. I was really, really tired and bored about four hours into it. The bad part of myelogram isn’t so much the procedure as some of the bad after-effects that occur if you don’t do the bedrest, so I was pretty motivated to be a good patient.

So this will be a calmer week medically. I get my final Euflexxa injection, take my final Orencia injection prior to surgery two weeks from today, and meet with my neurosurgeon to go over the myelogram and CAT scan results. Next week is a pretty quiet week, then the following Monday is surgery. At least that’s when it’s currently planned. I have some travel plans in early May that, if the doctor won’t let me travel that soon after surgery, I will need to reschedule the surgery until after the travel. We’ll see.

I hope your life has been less medically exciting than mine has been lately. I’ll keep you posted as we move forward on all this stuff. Thanks for checking in.

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